The goal of this blog is to inform, encourage and inspire mothers of children with special needs, as well as those who love and support them. Please share your advice, challenges and triumphs.

Thursday, June 25, 2009

Autism's False Prophets: A look at the role of bad science and good intentions

Autism's False Prophets: Bad science, risky medicine, and the search for a cure, explores the role of social forces in shaping what we perceive as "science" and "truth." Through great research, author Paul A. Offit debunks the idea that vaccines or mercury cause autism, or that biomedical "alternative" treatments will cure it. He aims to give voice to parents who do NOT buy into this idea, and resent the diversion of research and resources spent to prove or disprove causation and miracle cures rather than interventions and family support.

Offit's book features a few parents who have publicized their beliefs, at times at the peril of their own family's safety from zealots. Camille Clark, the woman behind the Autism Diva blog, has been harassed by phone and e-mail; it looks like the blog is no longer active but the archives are fascinating.

Kathleen Seidel is an activist who started neurodiversity.com. She has had her share of vocal detractors as well, many other parents of children with autism. Her web site/blog has a great Health Fraud section. Kathleen and I are on the "wrong"side when it comes to conspiracy theories about "Big Pharma" (the pharmacy industry) being in cahoots with the government to cover-up harm done by vaccines. We're not buying it.

Neither are we buying the promise of alternative "cures." Says Kathleen, in the book, "When I read about a doctor who suggests to a parent that they take out a second mortgage on their house so they can buy a home Hyperbaric Oxygen Therapy Chamber, I want to cry." (230).

I encourage readers to check out these web sites, and read Autism's False Prophets. Have you tried a non-traditional treatment for your child with special needs? What was your experience like? I shared a bit about our family's experience in my post Race for a cure or journey towards acceptance? Please share yours.

15 comments:

Anonymous
said...

I can never understand why some parents 'pooh-pooh' those of us who have different beliefs than them (a certain blonde former playmate comes to mind...granted she has done good things, but she has also done negative things and made several people I know, very mean).

I think there are many 'causes' of autism and also many 'ways of treating' autism (it is a spectrum disorder not a one size fits all). One thing I have found is that parents have a lot of guilt about 'not doing enough' or maybe 'causing' it. Both of which are not true. That shouldn't be the reason to be mean to others.

You know me, I am the one singing "koom by yah" and saying, "why can't we all get along?".

I agree wholeheartedly with the criticism of unscrupulous purveyors of "cures" that do nothing of the sort. To exploit the anguish of parents who desperately want to help their children is utterly low. I am also very troubled by the attacks on vaccines which, if unchecked, will cause big, big problems down the line. Unfortunately, medicine as we know it, because of the scientific procedures that underlie it, does well at certain kinds of things, and not so well at others. As an anthropologist, it's so very clear to me that what unites most, shall we say, unconventional approaches to health and wellness is their rootedness in a cultural and social world that allows them to provide meaning and offer social support for those that need it. Conventional medicine doesn't always do this well -- it's not arguably its job -- and it's hardly surprising that people go outside and around it for what they need. I know this is why some health insurers now allow patients to selectively choose "alternative" therapies; I think I'd rather they examined the root of the problem rather than trying to paper over the cracks by "outsourcing" medicine. Anyway, that's my 2 cents.

Wow, Sylvie - you are mirroring just what I'm reading about. I'm doing a bunch of reading on the topic and it's fascinating. A central idea is that we should call/think of alternative medicine as alternatives TO medicine.

Tell you what. The best work I've seen with little miss hasn't come from anything spectacular or off the beaten path, or from the professionals, even, but just the regular common constant training/loving informative work I did with my other neurotypical kids in their young formative years. Provide opportunities and information and they gradually come together. It's not as "magical" as some of those miracle cures, but it sure works for us. Whatever works for everyone else--I hope they can use it in peace.

My son is 21 and has aged out of school. We had a rough week last week; every mistaken behavior in his arsenal unleashed and I connect it to grieving; grieving on all of our parts that the future is so unsure. But we let him express his anger and took lots of naps ourselves......This week is a new week, we had a great walk in the woods today, and I heard him laugh outdoors and I truly feel that in time, all will be well. Love truly is the answer. Pam

You had me at "he said"!! The last we saw of Oscar he was non-verbal (granted he was, what, six?) but still. How encouraging!!! Yes, the whole "neurodiversity" movement is very strong, and interesting.

Please encourage me to start this blog up after the summer - I've gone on an informal hiatus.

So you and Jenny McCarthy aren't best friends or anything, then? I subscribe to a science podcast or two and they accuse her of doing more harm than good. That because of her (and people like her), more children are dying and getting sick (and therefore making other children sick) because of their anti-vaccination beliefs. They are seeing a significant increase in disease outbreaks that were virtually nonexistent before. I applaud you for being an independent and critical thinker, instead of a sheep.

Explain why you, the mother of a special needs child, feel the compulsion to demean the mother of another special needs child, Sarah Palin, and call into question the imagined "inferiority" of those who voted for McCain-Palin instead of the fraud that the Dem Party installed at the expense of Hillary Clinton, whose delegates were simply gifted to the inexperienced male. This is leaving aside the interesting fact that no one raises Biden when speaking of the unfortunate choice of voting for Obama, yet so-called "progressive" women have been convinced by the Obama freakhouse fratboys that they earn some kind of cheap credentials by bashing Palin to this day. How sad is that?

Here you go. To get you started, here is one woman who has her head screwed on much more tightly, and understands that if the symbolism of a "black" president matters so much, then the fact that said president is a chauvenist PIG also matters:

http://www.more.com/2050/9349-where-palin-puts-obama-to

Palin does indeed put Obama to shame, much like voters who were not duped by Obama also put all "hopey-changey" sloganeering-duped voters to shame.

That a good enough topic for you? I have many, many, many more links to blogs of intelligent progressive women who are wayyyyyyyy out in front of this topic in case you're still feeling lost.

Oh, and btw, Happy Birthday, Secretary Clinton! Thank you so much for your adult work in freeing political prisoners all across the globe who get in the way of human sexual trafficking. It's relaxing to know that there is one adult on the job while fratboy Obama plays golf and poker and basketball with the boyz as he continues Bush's war on terror, and expands Bush's Faith-based Office, and allows the torture and rendition to continue unaccounted for. Oh yes, and continues the Bush-Cheney policy of secret meetings with captains of industry. How proud the voters of "Obama-Biden" must be to know that Big Pharma is all taken care of.

Well, Robyn, you lost me when you yelled nonstop at me on the phone when I asked a simple question. Your words were meaningless; the only message I got was that my cousin, who I spent some great time with growing up, was unable to stop ranting. Clearly you value politics and being "right" more than relationships, which is too sad.

And yes, I have friends who are die hard conservatives, yet we manage to spar a bit and then go on with our friendship. This does not seem to be an option for you. I'm very sorry that it isn't.

About Me

I am the mother of two sons, one on the autism spectrum.My musings at times . reflect my educational background in sociology and social work and work as a public policy researcher and grant writer. At other times my musings contradict my prior convictions - ah, the perks of life experience. I live near Portland, Oregon.